Sunday, August 28, 2011

From Anxiety to Hope

Sorry I have been absent for over a week. The hurricane coming through was the most relaxing part of my week! Out of 5 days, I was out of the house and on my feet for 4 of them, including an all-day college visit, a massive shopping trip, and a trip back and forth to NYC. I didn't crash until Friday evening, after NY, when I felt like someone had beat me up. I mostly rested yesterday and am feeling fine again today.

But today's post isn't about me; it's about our 17-year old son, Jamie. I've mentioned a few times recently that he's had a really rough summer. It appears to be mostly due to herx reactions from his treatment of Lyme disease, plus two other tick-borne infections, babesia and bartonella. Whatever the reason, the bottom line is that he has spent most of the summer lying on the couch in our family room, reading and watching TV. He got his full, unrestricted driver's license this summer, but he barely drove at all. He hardly saw any friends all summer either.

So, my husband, Ken, and I have been extremely worried about school starting next week. The anxiety has been building because in his current state, there's no way he'd be able to attend school full-time as he has in recent years. This is his senior year, so we have the added pressure of applying to colleges. We've been visiting them this summer, all the while wondering how on earth he'll be able to manage it.

Another source of anxiety was his annual check-up with his pediatrician last week. Jamie has only grown a quarter inch taller in two years and moved from the 90th percentile for height (where he'd been consistently since birth) to the 50th. It's been proven through research that people with CFS generally secrete less growth hormone (GH) than healthy people because GH is secreted durng deep stage 3 and stage 4 sleep, of which we rarely get enough. So, all this anxiety has been building, and we've been dreading the coming week when school starts again.

We are all feeling a lot better now, though, thanks to our visit to see Dr. Levine in NYC on Friday and some e-mail correspondence with Dr. Rowe. Both of them have been immensely helpful! This was the first time Jamie had seen Dr. Levine, though I have been her patient for about 5 years. She's an Infectious Disease doctor who specializes in CFS and is on the CFS Advisory Committee for the Department of Health and Human Services. I decided to take Jamie to see her because most of the treatments that have helped me the most have come from her. We left with a whole list of treatments to try for Jamie, to help to control his out-of-control symptoms (mostly aches and exhaustion) and try to improve his stamina:

Dr. Rowe suggested we try a new medication, clonidine, that is OK to take with Jamie's current medications and, if it is tolerated, can potentially help with sleep dysfunction (in addition to his current treatments for sleep dysfunction which help though he is still not getting enough deep sleep), Orthostatic Intolerance (currently treated with salt and Florinef though again he's gotten worse lately), and can help the body to secrete more growth hormone as well. A triple bonus!

Dr. Levine agreed to start him on weekly saline IVs. This is becoming a common practice, particularly with teen patients, and is something else Dr. Rowe frequently does. The IV usually has an immediate positive effect, increasing blood volume much more effectively than just drinking salt and fluids and improving OI, thus improving most other CFS symptoms (many of which result from OI). Another local friend who goes to school with Jamie is starting the same thing next week, so his parents have already paved the way for us and found a local doctor willing to administer the IVs. Obviously, this is only a temporary effect, but from what I've heard form others, it can really help for a few days afterward.

Dr. Levine will probably also start Jamie on low-dose naltrexone (LDN) which has helped me quite a bit. This was the #1 thing I wanted to ask her about for Jamie and was her first suggestion, so we were both on the same page with that one! She took blood for lots of tests on Friday, but Jamie's previous tests a few years ago showed very low Natural Killer cell function, which LDN can help with.

Finally, she will call us when his blood test results come in to discuss whether those present any additional treatment opportunities.

Jamie and I left her office on Friday in good spirits. After months of worry and anxiety, we now have some hope. Three treatments to try (and perhaps more) means three opportunities for improvement and a much more optimistic view of the coming school year. I was interested to hear what Jamie thought, since Ken and I have been trying to hide our anxiety from him. He told me over lunch that he's been feeling all the same anxieties and worries over all the same issues (duh! of course he has!), so he was also greatly relieved and feeling hopeful that we now have some options to try.

So, all of this has reminded me of a couple of truisms that I seem to keep relearning over and over again. One, that it's always best to get things out in the open and talk about them. And, two, that the best approach to CFS treatment is to persevere and keep trying. If one thing doesn't work, move onto the next...try, try again. Despite what we sometimes hear, there are actually lots of options for treating CFS, even though we don't know its cause yet. Different things work for different people, and we just have to keep trying. To that end, I will write the post I have been promising, about what has worked best for me and allowed me to be so active this summer. With school starting this week, my writing time will increase exponentially!

Even the hurricane this weekend worked in our favor. School has been canceled for Monday for my youngest son, pushing back the day when Seniors start to Thursday. This will give Jamie an extra day to recover from oral surgery (assuming it's not canceled tomorrow). He's having all four wisdom teeth out. Fortunately, it's being done in the hospital, so he'll get IV fluids (he may actually feel better than he's felt in weeks, other than the pain in his mouth!).

It is wonderful Jamie can get to Dr. Levine and get the help needed with the CFS. Certainly it has to be hard to manage both the Lyme and Bart and Babesia AND CFS....Not an easy task with being in school and heading to college in the future. Hope and pray theses medications help him to have more energy and keep the bugs from beating him up so much.

Yes, you are so right, Renee. dealing with all of these illnesses at once is so difficult.

I didn't explain it very well here, but they all interact and make each other worse, which is why we think that finding more effective CFS treatments will help all of it.

Both Lyme and CFS cause viral re-activation, sleep dysfunction, and Orthostatic Intolerance. CFS is, of course, an immune system disorder, so that makes it harder for the body to fight the tick-borne illnesses.

They are all interconnected and impossible to separate their effects. So we are hopeful that at least one or more of these options might help improve his overall health.

I can't imagine being a teen and going through this...but having options and knowing there is hope is important for many of us...He's lucky to have a supportive family as well. I'm glad that you have steps you can take for Jamie...I hope they improve him enough that he can manage school.

I have a friend who got ME as a teen after chicken pox and while her parents are wonderful, they would drag her out of bed crying in the morning and force her off to school.

I understand (and read about) all the treatment options, but have trouble finding a Dr. who will do anything for me.

You probably are already aware that most colleges have someone who helps coordinate learning for students with special needs. Having trouble with words today, what I'm trying to get at is: if Jamie has any difficulties based on his health issues while in college, perhaps a program can be tailored to his particular situation. Someone taping lectures that he can listen to later, extensions on papers if necessary.Just a thought. When I taught at the college level, I made adjustments for students with various learning and health issues, and often directed them to the special needs folks for further assistance.I hope that Jamie doesn't need adjustments made; that these new treatments help give him the energy and stamina to do well his final high school year and on to college.

I have had Chronic Fatigue Syndrome (CFS or CFIDS) since March 2002. My 19-year old and 16-year old sons also have CFS, and my older son also has Lyme disease plus two other tick infections. This blog is about how our family is learning to live with chronic illness, with a focus on living and enjoying our lives in spite of these challenges.